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CHfather last won the day on September 12

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About CHfather

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  1. CHfather


    D3 regimen and busting (read the numbered files in the ClusterBuster Files section to learn more about busting) are the only ways I know to "get them go away" (end your cycle) without a visit to a neuro for a prescription (such as verapamil and/or prednisone, which might or might not work to end your cycle). Of course, you can get individual attacks to go away with oxygen, sumatriptan, and other things that you might get from a neuro. And I suppose you might step up from straight coffee to energy shots (such as 5-Hour Energy) to maybe get quicker aborts.
  2. CHfather


    Hubby, type CBD into the search bar at the top right of the page. It will lead you to several accounts from people who say they were significantly helped by CBD oil.
  3. CHfather

    FDA approval...new migraine preventive drug...

    Thanks, jon'. I posted some info a while back on the Research board that suggested that this type of drug ought to work well for people with CH, too. No long-term studies yet of any kind of use, so l-t side effects undetermined.
  4. CHfather

    What would you do

    tues' -- No oxygen? Are you doing the D3 regimen? You find that the suma pills actually help you? I ask because most people say they don't help, but you're the second person today to say that they do help them.
  5. CHfather

    What would you do

    Yann, this is of course very painful to read for those of us who understand what you are going through. It's not clear to me why you're only planning to do the D3 regimen "starting next winter." It's something you should do right now, I think. Have you looked into the GammaCore device at all -- a portable method for aborting attacks. http://gammacore.co.uk/ Mixed reviews, apparently not as effective for people with chronic CH, and quite expensive in the US (don't know about Europe), but I'd think it could be worth trying. Also, the new preventive medicine erenumab (Aimovig) is approved in the EU, at least for migraine, and I think it can be expected to be helpful for CH, if you can get a doctor to prescribe it. As I understand it right now, you have to go to a doctor's office to get an injection every two months -- but I could be wrong about that. CBD oil as an abortive and possible preventive? Lots of good reviews here. You can look it up by typing CBD into the search bar at the top right of the page. Do you know about splitting triptan injections so you use a lot less each time, and therefore have a lot less side effects? https://clusterbusters.org/forums/topic/2446-extending-imitrex/ As you say, many people have found relief from busting. I can see how it doesn't really fit your schedule right now, but of course it's something you should consider. You would not be the first person to come here thinking it would be better to not be alive, and to find life a lot better.
  6. CHfather

    Hi all... newbie here

    There's a fairly high likelihood that your primary will be shocked by the amount of D3, and even try to talk you out of it. S/he will be wrong about that. You don't need to have the blood workup before starting the D3 at a basic level -- it is virtually guaranteed that your D is low, particularly by the standards required to treat CH, and starting at 10 or 20kIU/day isn't going to do you any harm in any event. Is the triptan injectable (could be pills (worthless) or nasal spray (iffy))?
  7. CHfather

    Hi all... newbie here

    Injectable triptans. Split them 3/1, or at least 2/1: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ D3. Start ASAP. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Energy shots. Drink one at first sign of an attack. 5-Hour Energy is a place to start (easy to chug, lots of caffeine). Check your triggers: https://clusterbusters.org/forums/topic/4568-triggers/ Benadryl. A lot of folks find that their CH ramps up in high pollen seasons, or from other allergies. "Batch" (one of the great experts) recommends standard dosing of 25mg 3/day and 50mg at night. That'll make you drowsy, but it might help your CH. Mushrooms and other substances: Read the numbered files in the ClusterBuster Files section Big compendium: Read Bob's Big Pocket Guide in the ClusterBuster Files section Your currents meds. What, specifically, are you taking, and how much? Oxygen. You could set up a system using welding O2 in a few days. ~15-20% of people with CH use it. You can't imagine the difference that O2 will make for you.
  8. According to this long-term evaluation of ten patients, effective for chronic CH. CONCLUSION: High volume suboccipital nerve blocks from this open label study appears to be effective in the preventive treatment of medicinal refractory CCH and shows consistent response over long-term use with high rates of pain freedom. For some reason, the system won't let me paste the whole summary. Here's a link to it: https://www.docguide.com/high-volume-anesthetic-suboccipital-nerve-blocks-treatment-refractory-chronic-cluster-headache-long-?tsid=5
  9. CHfather

    Cycle ending signs?

    Mum', I think you're going to find that part of that frustrating "everyone is different" thing about CH is that there are many ways in which cycles develop and end, and they don't always stay the same for individuals from one cycle to the next. I would guess that the most common pattern is ramping up pretty bad in the days before they fade away. For sure, it would not be unusual for the D3 to now be having an effect on his attacks. I have questions, one of which is more appropriate for a closed board such as "Share Your Busting Stories." Does he still not have access to oxygen when he gets his attacks? Is he doing anything to abort his attacks? Is he doing anything besides D3 as a preventive? And (the closed board one) is he busting now? All of those things are going to affect the pattern of his attacks, and maybe the duration of his cycle.
  10. CHfather

    Newbie with many questions

    Ratio of women to men diagnosed with CH has dropped from 6:1 to 2:1, and I at least am completely willing to believe that that's just diagnostic error based on the assumption that women don't get CH. Nighttime attacks are not necessary for CH diagnosis.
  11. CHfather

    Newbie with many questions

    You might know that CH was once called (and still is, I guess) "histamine headache." You don't need this now, but many people find that quickly drinking an energy shot such as 5-Hour-Energy at the start of an attack can help quite a bit. There's a lot of caffeine in those things (= couple of cups of coffee), and many believe that other ingredients in energy shots (taurine, maybe niacin, maybe B vitamins) also help.
  12. CHfather

    Newbie with many questions

    I'm not sure what the info I referred you to on the D3 regimen says about allergies, but the developer of the D3 regimen recommends Benadryl 4/day (25 mg three times and 50 mg at night), because he has noticed a strong correlation between high-pollen seasons (ands allergies in general) and CH. CH is a very harsh thing to have, and your fears about another cycle are justified. However, if you have CH, you had none of the treatments that make it manageable for most people. D3, a preventive (usually verapamil), an abortive (oxygen and injectable sumatriptan), awareness of triggers, use of melatonin, caffeine in some form, and some other tricks -- those all help, and you had none of them. A course of corticosteroids can sometimes help, too. And the new medication, erenumab (Aimovig), is showing a lot of promise as an effective preventive. None of this will fully alleviate your fear (there have been people here with chronic CH who have said they preferred it because they didn't live in dread any longer about when their next cycle might come), but also your fear shouldn't be disproportionate to the treatment possibilities. And I haven't mentioned "busting," which is the reason this site exists and which has made a huge difference for many. Read about busting in the numbered files in the ClusterBuster Files section, and also look through that section for other potentially helpful information ("Bob's Big Pocket Guide" is very thorough).
  13. CHfather

    Newbie with many questions

    Sure sounds like CH. There's nor real point in me talking about how stupid the medical advice you have received is -- you already know that. Nobody talks about "vascular migraine" anymore -- CH is just as "vascular" as migraine; it seems unlikely that you overexert yourself at roughly 3:00 every day . . . . and some day maybe we will know why so many doctors are so incredibly, tragically (for the patients) lost when it comes to O2. I would only urge you not to take an "if it does return" stance and assume that it will. Since headache centers often have long wait times for appointments, I would seriously consider setting up an appointment now. And it is probably very advisable to start the D3 regimen now: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
  14. CHfather

    Newbie with many questions

    simple', I really got nothing valuable for you, but . . . Regarding #1, here is a passage from a fairly large study of CH patients in 2011. It answers the "does anyone" part of your question, but it's pretty fuzzy overall: A total of 21% of survey responders noted an aura history before a cluster headache attack. Survey responders were asked if they ever experienced any symptoms including aura prior to cluster headache onset. Auras could be visual, sensory, language/speech, and brainstem (dizziness and vertigo). Aura duration was less than 5 minutes in 25%, 5-10 minutes in 30%, 11-15 minutes in 17%, 16-20 minutes in 10%, 21-25 minutes in 10%, and 25 minutes or more in 8% of patients. Almost all auras with cluster headache lasted less than 25 minutes (92%), and 55% of patients with cluster headache had auras that lasted 10 minutes or less. #2. I haven't heard of this, and I'd say it's surely not common, but maybe someone has it as a symptom. #3. Yes, some people have warning signs that their cycles are beginning, but again -- from what I have read -- fatigue and dizziness aren't common onset signals. #4. There are a lot of CH-like symptoms in there (beer as a trigger, rocking and moaning, thinking it's a teeth issue), but others not so familiar to me. You don't say much that relates to the basic diagnostic things: timing of attacks, length of attacks, attacks/day, location(s) of pain, physical manifestations in eyes/nose. I assume you have looked up the symptoms or indicators and know what they are. Triptans in pill form virtually never work for CH; nasal spray sometimes works; injections almost always work (although there's nothing diagnostically useful about that since triptan injections work for a lot of types of "headaches"). You don't mention oxygen, which when set up and used effectively aborts attacks for a very large percentage of people with CH. That might be a next step with both therapeutic and diagnostic potential, since O2 is generally not effective for other headache types.